End-of-Life Care for a Man With Developmental Disabilities

Ghan-Shyam Lohiya, MD, MS, Lilia Tan-Figueroa, MD, Francis M. Crinella, PhD


J Am Board Fam Med. 2003;16(1) 

In This Article

Abstract and Introduction

Background: Science can artificially maintain many essential life functions. Does such care prolong life or dying?
Methods: A case is described of a patient with developmental disability with unknown health care choices who was hospitalized for drug-resistant urosepsis. He developed aspiration pneumonia, deep vein thrombosis, and respiratory arrest. He required gastrostomy, tracheostomy, artificial ventilation, parenteral nutrition, hemodialysis, multiple anti-infective agents, and blood transfusions. On day 58, a bioethics committee recommended against cardiopulmonary resuscitation. On day 66, the patient's conservator concurred but required continuation of artificial ventilation. To the dismay of some caretakers, the patient continued to receive intrusive care until his death on day 104. The hospital charge was $709,206.
Results and Conclusion: Hospital care of patients with mental incapacity can be clinically and ethically challenging. End-of-life decisions can be facilitated when the patient's legal representative and physician actively advocate the patient's best interests and communicate frequently and openly. Suggestions are made for such exigencies.

US code (Title 42, chapter 75, subchapter 1, section 6001(5[1] 1992) defines a developmental disability as a severe and chronic disability that becomes manifest before the person's 22nd birthday (18th in California) and is due to mental retardation, epilepsy, cerebral palsy, autism, or a similar condition. Such disability affects more than 7 million Americans and forces 50,000 of them to live in residential centers for persons with developmental disabilities.[1] Many such residents have other severe disabilities (dysphagia, contractures, quadriplegia, kyphoscoliosis, recurrent respiratory tract or urinary tract infections, and defects of speech, vision, or hearing). Modern medical and nursing care have increased their lifespan by managing many previously fatal acute illnesses and by maintaining essential life processes through long-term dialysis, gastrostomy, nephrostomy, or tracheostomy.[2,3]

Some seriously ill residents receive an entire spectrum of intrusive, life-sustaining care before finally dying, often to the dismay of their physicians and caretakers.[2,3] For ordinary Americans, potentially harmful and futile care can be withheld or withdrawn according to advance directives[4] or a surrogate's substitute judgment reflecting the patients' premorbid wishes. Most residents of centers for persons with developmental disabilities, however, are unable to exercise this right because of their limited mental incapacity to make an informed end-of-life decision. Substituted judgments cannot be made for them, because they might have never expressed any values or preferences.[2,3] They can find themselves at the mercy of medical, legal, and administrative bureaucracies, which often default in favor of aggressive treatment. We illustrate these complex issues and suggest practical ways to improve the decision-making process.


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